One Patient's Positive Perspectives

Prognosis and Hope: Lupus is not contagious and cannot be “given” to another person. Lupus is unlike and unrelated to HIV/AIDS or any other infectious disease. Once people realize this, they may want more information or to correct misconceptions about it.

Lupus is an invisible autoimmune disease

Lupus is an autoimmune disease that is mostly invisible. Rashes and visible joint inflammation are understood easily because others can see them, but are the least severe of lupus symptoms. When the rash clears or the swelling subsides, lupus may still be active and causing organ damage or discomfort, without visible signs. Others often don’t understand this hidden aspect of lupus.

When I need to talk about my lupus

Sometimes when I need to talk about my lupus with people at work, with family or friends, lupus is misunderstood. Some people have mistakenly assumed it will be fatal or life-shortening. Although uncontrolled lupus can damage vital organs such as kidneys, liver and heart, with proper treatment, most lupus patients can live a normal life span. I try to help others understand this.

A miracle cure?

Then, there are those who insist lupus is curable, and they tell me about a supplement or amazing natural remedy that I need to try. I’ve been told many anecdotal reports of cousins, friends and neighbors who “got over” their lupus because they were smart enough to take the secret cure the doctors don’t want me to know about… the magic supplement. I try being polite, and realize they just want me to feel better.

Some in denial about my lupus

And, there are the people who do not believe that I have lupus. I have been frustrated, and even tempted to anger when someone clearly denies I have lupus because they have decided I don’t have their permission or approval to be sick. I am not completely sure what to do with this self-centered attitude toward my lupus, but it is hard to deal with! It is certain these people remove themselves from my support network, probably unintentionally. I don’t waste my time trying to convince them.

Someone you know has lupus, ask them about it.

For most people, knowing there is no cure makes them sincerely concerned. I appreciate the conversations where I am able to raise others’ lupus awareness, and perhaps help them understand it better. I believe everyone should know enough about lupus to be able to recognize possible signs and symptoms, and to encourage someone who may have lupus to get medical care. I do my part in spreading lupus awareness to those I know, because someone they know has lupus.

Comments on: "Prognosis and Hope: Fact #27 – Lupus is not contagious but is often invisible or misunderstood" (2)

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